A Pitt Meadows boy who lost his aunt has organized a walk to raise awareness about dystonia on Sunday.
It will leave from Commons Waterfront Park in Pitt Meadows at 10 a.m.
“There is no cure for this, so the more awareness there is, and the more people donate, the better chance of finding a cure,” said Debra Douglas.
Her 11-year-old son Corbin wanted to organize the walk in memory of his aunt, Debra’s twin sister, Donna L’Arrivee. She passed away in 2016 at 45 years of age, and suffered from severe dystonia, said Douglas.
Dystonia is a movement disorder. It is characterized by painful and prolonged muscle contractions, and results in abnormal movements and postures. Patients might have a dragging leg, uncontrolled blinking or difficulty with speech. They feel frequent pain an exhaustion.
Corbin is a Scout, and was considering how he could do a community service when he proposed the memorial walk to his mother.
“This walk is what he chose to do,” said Debra. “He wanted to raise awareness about dystonia and to keep his aunt’s legacy alive.”
They have been working on the project together. Corbin is aiming for nothing less than the Chief Scout Award, which is the highest honour in scouting.
She told him he will have to make a speech for those attending.
“He said ‘I’ll probably cry,’ and I said ‘That’s okay.’”
Corbin was very close with his aunt, she said.
Debra has been diagnosed with a genetic connective tissue disorder that causes painful joints, and has numerous co-morbid diagnoses. She worries about her children inheriting genetic disorders.
They are leading the walk, and expect at least 25 people to talk part. They would like to make it an annual event.
They will not be taking donations, which may instead be made directly to the Dystonia Medical Research Foundation of Canada.